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Deaths of individuals with developmental disabilities due to poor quality of care have been highlighted in the media. Prior GAO work has raised concerns about inadequate safeguards for such individuals receiving care through state Medicaid home and community-based services (HCBS) waivers. CMS approves and oversees these waivers. Safeguards include the review of, and follow-up action to, critical incidents--events that harm or have the potential to harm waiver beneficiaries. GAO was asked to examine the extent to which states (1) include, as a critical incident, deaths among individuals with developmental disabilities in waiver programs; (2) have basic components in place to review such deaths; and (3) have adopted additional components to review deaths. GAO interviewed state developmental disabilities agency officials and external stakeholders in 14 states, e-mailed a survey to 35 states and D.C., interviewed experts, and reviewed documents.

All 14 states whose officials GAO interviewed included death among individuals with developmental disabilities as a critical incident in their waiver programs. The developmental disabilities agencies in all 14 states required waiver service providers to report such deaths to the agencies. Consistent with CMS's expectation that states review critical incidents, nearly all states had processes in place to review these deaths. The extent to which states other than these 14 identified death as a critical incident has not been established. All but 1 of the 14 states included most of the six basic mortality review components identified as important by experts when reviewing deaths among individuals with developmental disabilities, but states varied somewhat in how they implemented components. For example, some states reviewed unexpected deaths only, while other states reviewed all deaths of individuals receiving Medicaid HCBS services. Mortality reviews were typically conducted at a local level, such as a county or region. Review findings led to local actions, such as tailored training with individual providers, to address quality of care. Officials in 13 of the 14 states reported that they aggregated mortality data, for example, by cause of death and age, whereas nationwide, 37 of 50 states aggregated mortality data and 13 states did not. For example, one California region observed an increase in choking deaths among individuals with developmental disabilities in 2007 and increased its educational outreach to families about choking prevention. Officials in several states said they believed their mortality reviews had reduced the risk of death and led to improvements in the quality of their HCBS waiver services. Four of the 14 states incorporated all additional components for more comprehensive mortality reviews. In general, these four additional components--state-level interdisciplinary mortality review committees, involvement of external stakeholders, statewide actions to address problems, and public reporting--gave the mortality reviews in these states greater accountability and transparency. Eleven of the 14 states had adopted at least one of these additional components. For example, 6 of the 14 states had interdisciplinary mortality review committees that reviewed deaths and that provided additional oversight to local review efforts, whereas nationwide, 24 of 50 states had review committees, and 26 states did not. In 6 of the 14 states, developmental disabilities agencies were not required to report deaths to the state protection and advocacy agencies, a key external stakeholder with authority to investigate deaths involving suspected abuse and neglect. Mortality reviews in 11 of the 14 states resulted in statewide actions, such as the issuance of safety alerts or new risk-prevention practices, to address quality-of-care concerns. Nationwide, 30 of 50 states took a statewide action to improve care, while 20 states did not. Four of the 14 states publicly reported mortality review information, such as posting annual mortality reports on their agency Web sites.

Recommendations for Executive Action

Status: Closed - Implemented

Comments: In response to our recommendation, CMS officials told us that they disseminated our report and recommendations to the National Association of State Medicaid Directors, the National Association of State Directors of Developmental Disabilities, the National Association of State Units on Aging, the National Association of State Head Injury Administrators, and other stakeholders on October 31, 2008, following a discussion at the National HCBS Waiver Conference on October 1, 2008. CMS officials also told us that they discussed our report and recommendations with representatives from the major State associations on January 27, 2009, and with the Director of the National Protection and Advocacy Association on March 4, 2009. CMS's actions will help states develop quality improvement strategies for their Medicaid HCBS waivers that serve individuals with developmental disabilities by providing information on how mortality reviews have been successfully implemented in other states. For example, our report provides in-depth information on comprehensive mortality review systems in Connecticut, Massachusetts, Minnesota, and Ohio.

Recommendation: To help states identify and address quality-of-care concerns among individuals with developmental disabilities receiving Medicaid HCBS waiver services, the Administrator of CMS should disseminate information to states about basic and additional components for mortality reviews.

Comments: In August 2009, CMS stated that it anticipated adding a question about mortality reviews to its next web-based version of the Home and Community-Based Services waiver application. CMS also indicated at that time that the next application version (i.e., Version 3.6) would be released in 2010. However, in July 2010, CMS indicated that this version would not be produced until 2011. In its 2011 update, CMS indicated that the version 3.6 online application had not yet been operationalized and therefore the recommendation should be left open until next year. In July 2013, CMS stated that version 3.6 remains on hold and that the agency is exploring other options for addressing this recommendation, with a target completion date of 12/31/2014.

Recommendation: To help states identify and address quality-of-care concerns among individuals with developmental disabilities receiving Medicaid HCBS waiver services, the Administrator of CMS should encourage states to (1) include death as a critical incident and conduct mortality reviews if they do not already do so and (2) broaden their mortality review processes if they already include death as a critical incident and conduct mortality reviews.

Comments: CMS agreed that external stakeholder involvement in mortality reviews for individuals with developmental disabilities being served by Medicaid's Home and Community-Based Services (HCBS) waiver is important, but stated that it would be difficult to have state Medicaid agencies report to their state office of protection and advocacy only deaths of individuals with developmental disabilities because the overall waiver program serves a wider population. CMS officials told GAO that consistency across Medicaid HCBS waiver programs serving different populations (e.g., persons who are aging, persons with terminal illnesses)is a priority.

Recommendation: To provide additional oversight of the quality of care provided to these individuals, the Administrator of CMS should establish as an expectation for HCBS waivers that state Medicaid agencies report all deaths among individuals with developmental disabilities receiving such waiver services to their state office of protection and advocacy.